Category: Special Needs/Disability

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.”

Valentine’s Day- a day of full of red hearts and chubby cupids, chocolate and flowers, cards and sappy sentiments. A day set aside to celebrate love.

When my husband and I were dating, I planned a pull-out-all-the-stops Valentine’s Day celebration, only to have him called in to work at the last minute. Left alone with my candles and chocolate, a dinner to pack in the fridge, I cried and mourned the by-myself night ahead of me.

That fairy-tale night. That date circled with a heart on the calendar that shouted to me that I must do something to show this guy I was smitten.

We plan the big wedding, we buy the breath-taking dress, we walk the aisle, and we throw the party.

Life happens. Kids come. Sometimes some are born with extreme needs. Businesses close. Finances become shaky. Tempers flare and frustrations mount.

The daily little foxes that spoil the vines and threaten to crack that very foundation poured years ago before a minister on a rainy Saturday.

And somewhere down the line, love can become no longer patient and sometimes a bit unkind.

As years pass, familiarity and assurance of unconditional love can make kindness dwindle; its reserves poured on strangers and acquaintances and used up.

Yet in the midst of the daily grind, amongst the frustrated and frantic, I find true love.

Not expected flowers and candy on a day. Not mushy-gushy, but love in action.

Love is the sound of my husband give my special-needs son a shower before school and hearing him say, “I love you…”

Because love is patient.

Love is his taking him to school so I don’t have to get out on a cold morning.

Because love is kind.

Love is working long hours to grow a business to provide for our family. Love is me not envying those whose husbands work steady hours, who go on regular date nights and take yearly vacations, but instead being thankful for what he does and why he does it.

Love is finding joy in the everyday moments.

Love is eating chips and guacamole in the kitchen instead of dinner out in a quiet restaurant.

It does not envy.

Love is buying new tires and putting gas in my van. Love is calling every night on the way home from work to ask if I need anything from the store without ever being asked or expecting thanks.

It does not boast.

Love is, in many years of marriage, not ever demanding that dinner be on the table, never asking what I did all day or proclaim that the house is a mess. Instead, love tells me that he could never do what I do.

It does not dishonor others.

Love is a daddy starting his baby girl’s car on a cold morning before she goes to work.

It is not self-seeking.

Love is not getting upset when I banged up our cars, got speeding tickets, ran over a mailbox, and even when I hit him backing out of our driveway.

It is not easily-angered.

Love is not pointing out my many short-comings and failures, but encouraging me to do what God has called me to.

It keeps no record of wrongs.

Love is staying together though circumstances that should have ripped us apart.

Love believes God for greater things than what we can see, but only He can do.

Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

Some days love must be sought on purpose. Because tempers flare and some days, people irritate.

But most days, I simply listen.

And I hear love in the sound of daddy-wrestling and brother-chasing, daughter-laughing and angel-seer giggling.

I hear “I love you’s” and read texts signed with hearts and it makes my own full.

I feel hugs and pucker kisses, small hands in mine and heads on my chest and I drink in all that they are.

I see all around me the evidence of those I love and remember that love is patient when I wish they would put their things away.

I thank God that by His grace that I have those who create messes and fill my days. I thank Him that they love me and He loves me.

I thank Him for love that always protects, hopes, and perseveres.

True love demonstrated and poured out on the cross – a red unlike any valentine and a love none can ever replicate.

Today I celebrate love, not because I have to, but because I get to. Because of Him and what He gave me. For what He gives me every day.

A few months ago, a friend and I were discussing a comment made by Michelle Duggar on her show 19 Kids and Counting. Mrs. Duggar was consulting her doctor about having more children at her age and as they discussed the risks, she remarked that she has been “dodging these odds” for over a decade already.

My friend said that as she watched the show, she waited for “It”.

I recently read a blog post about a mommy and a surprise pregnancy- at the “high-risk” age.

“It”.

I remember a conversation with a friend who didn’t want to have any more children after 35, because, “you know-the ‘risks.”

“Oh, you mean like having a child with Down syndrome?” I asked as I bounced my little “risk” on my hip.

“It. Again.

Children with Down syndrome are born to mothers of all ages. In fact, more babies with Down syndrome are born to women under 35 simply because more women in that age group give birth.

According to the CDC, one in 700 babies is born with Down syndrome.

That number is pretty large actually considering the number of babies born daily.

And for those of us who didn’t “dodge the odds” – however small or large those odds happened to be…

We wait for “It”.

“It” looms large and hangs in the air.

“It” may be on a TV show, a movie, in an article, a blog or during a conversation.

I find myself holding my breath until “It” comes.

“When the doctors told me my daughter could have Down syndrome because of my age, he put me in a room full of these pictures. So I turned my chair the other way. I confessed she would not have “It” and she didn’t. And she is SO smart.” This from a dear sister in Christ, who finally told me because she thought I was ready to hear it.

No, not really ready.

One friend, on several occasions, a friend revealed to me that she would have aborted her baby if the test came back positive for Down syndrome.

Confession is good for the soul they say, but not always to the one hearing.

I often shake inside as the conversation unfolds. That building and escalating to the peak of that point when I know “It” is coming … and I often struggle with what to say.

“I wonder how many babies are aborted because the doctors were wrong and they were perfectly fine.”

My mind hears that to aborting a baby without “It” would be worse.

And my heart hears an underlying insinuation that people without “It” are more valuable.

I often weep that people find my son and those like him so undesirable and worth dodging.

Even the website for the CDC classifies “It” under birth defect. I shudder as the URL pops on my page.

According to the CDC, my son has a defect. Why after twelve years of his life is this still so fresh?

Is it because I never even had “It” on my radar? Is it the attitude that “It” is the undesired result?

”It” is not just Down syndrome, but any disability. The attitude is much the same. So I nod and smile as people discuss the baby who was supposed to have this and that condition and is now the smartest, the most athletic, and the-whatever-opposite- of-what-they-were-told, – all the while I am screaming inside.

“Don’t you see?!?! There’s more to him! He is not “It”! I love him just as much as my children who don’t have “It”!

Why can’t the world see? Why did I never see before “It” entered my life?

I am saddened that a godly woman, known for her desire to have as many children God allows, missed an opportunity to tell the world she would welcome a child with Down syndrome.

Yet, I do believe Mrs. Duggar’s comment was not meant to be hurtful.

She and her family are obviously pro-life, making their beliefs very public. Recently, her daughter Jessa was blasted by the media for comparing abortion to the Holocaust. She specifically referred to Down syndrome:

“Millions of innocents denied the most basic and fundamental of all rights–their right to life….The belief that some human beings are “not fit to live.” So they’re murdered. Slaughtered. Kids with Down syndrome or other disabilities. The sickly. The elderly.” And she goes on to say all life is precious.

I realize our words do not always line up with our intent; I believe Mrs. Duggar was trying to prove a point to those who think she may not need to “risk” having another child.

Unfortunately, “It” becomes the reason.

I am, however, horribly offended that a mother would look at a child with Down syndrome and tell her mother, “God would never do that to me.”

What makes “It” so horrible and frightful that doctors suggest ending an innocent baby’s life?

Why does not having “It” prompt cheers of Hallelujahs and testimonies of God’s goodness?

Did God not show Himself faithful to me? What about those, like me, who prayed for “It” not to be, but is?

I know now that “It” is not a failure, lack of faith or unanswered prayer as I once thought.

On this side of “It”, I see the delicate beauty of those who look a little different but love unabashedly.

I treasure friendships formed by bonds of “It” that I otherwise may have never known.

On this side, I cling to His promises, praising Him for each new success, no matter how seemingly small.

I am struck by the enormity of a tiny word as I look back to one of the most difficult times of my life – when I awaited the test results for “It”.

The fear of the unknown and pride of the unfathomable plunged me into a chasm of anguish when “It” was confirmed and would soon be my reality.

Then I saw the face of “It”…

And love overwhelmed my soul while gratitude flooded my eyes for the exquisite creation from my God Who trusted me with such a gift.

A good and perfect gift just the same as if he were born without “It”.

“It” looks with longing almond eyes and smiles with hope.

“It” speaks with no words, while I beg God to quench the suffocating silence.

But challenges and differences don’t make us less, but make us stronger because through Him, the weak are strong.

The strongest I’ve known are weak in the eyes of the world.

If only my mere, fallible words could express my mama’s heart and tell of the love that is so deep and saturating to the point of that it practically hurts.

“It” will always be a part of my son’s life. Of my life.

I’ve heard so often when speaking of “It”, “Doctors are not always right. They don’t know everything. ”

Misdiagnoses do occur. But in our case, the diagnosis was correct.

But the doctor didn’t know everything.

Because no doctor could predict how much I would love and protect and guard my precious boy with a fierceness I didn’t know I possessed.

The doctor, who during his bleak announcement of doom and who could not see past “It”, would never see the exquisite and unique little soul that is my son. He didn’t know that child I was carrying would change hearts and minds.

I just came across an article in a magazine about raising a disabled child. While I am thoroughly immersed in the special-needs world, I am drawn to articles in publications of a more typical nature.

Maybe I’m drawn because I am so aware of how the normal in this world often forgets about those deemed different.

The article caught my eye specifically as it highlighted a child with the same diagnosis as a close friend of mine’s son. While rarer than Down syndrome or autism, it often “looks “similar. And yet still different.

Like disability itself.

The scope of disability is broad. The word scope itself is contradictory to me, because it means “extent”, but my mind sees a telescope. Narrow, but enabling us to see an expansive view of things far away and out of our normal field of vision.

Disability is often like this. For those of us who live it daily, whether physical, intellectual or the many and varied combinations of both, our world can seem very small and closed as we operate with tunnel-vision.

My own experiences have often left me feeling alone and isolated.

Left wondering if anyone except me and those who live as I do really care about the seemingly small, yet realistically broad population affected by disability.

Social activities, clubs, groups and even churches are geared to the typically-developed. While many strides have been made to accommodate the disabled, there remains the unspoken sense that things just don’t apply my special-needs child.

I parent him differently. Time and again I have heard to treat him like my others and have the same expectations, but the reality is – well, unrealistic.

How can I explain right and wrong to a child who often does not understand a word I say?

And if he does, how do I know he does? He can’t tell me. I can only assume and hope.

I never really know how much he knows. Only by extreme repetition and extensive practice is a task accomplished, but I really never know if he gets it, or if it is just rote habit.

The physical, mental and emotional exhaustion can be overwhelming. For me, it’s the constant and active stage of pre-talking toddlerhood, encased in an 80-pound 12-year old. There is no indication or prediction of when or even if the next stage will come.

Throw in puberty changes and up goes the ante.

And that’s just the now. The stress of planning for the future overwhelms me and while I lay it before the Lord, I feel irresponsible if I simply don’t worry.

Recently, my son accidentally got locked in our van. Fortunately, it was running with the AC on. But as I motioned repeatedly for him to unlock the door: “Come on, right here,” as I banged on the place the lock would so simply slide, he just looked at me and smiled.

I ordered a tag for his shoe with a safety alert blaring “I have autism and am non-verbal. “ Because running or bolting is a concern.

My typically-developed toddler once ran from me in a parking lot and after discipline never did again.

But again-it’s different.

I long to hear: “I love you Mommy”. And add cute sayings for my list. My other children have many.

But one has only a name.

I know that words are not always necessary.

But the want in me aches to hear a spoken phrase.

And my self-centeredness makes me ashamed.

I read a comment recently from a mother who lost her baby who would have been severely disabled if he had lived. She said people told her it was for the best.

And she said she would see parents of disabled children and think how lucky they are.

I am blessed beyond measure to be his mother. I am privileged and unworthy.

My reality is the constant check of wanting more for my son and feeling guilty for doing so.

The constant element that permeates my life is only occasionally smattered in a magazine that talks of usual life. My constant different mixed with my everyday normal calling of wife and mother.

It’s where my callings meet – of those I chose and those He chose.

A ministry given by the same grace by which He sustains me in my weakness.

He carries me through what He’s called me to do.

“He who calls you is faithful, who also will do it.”

I often hear, “I don’t know how you do it.” I do not think any of us really know how we do it, except that we just do because we have to. And I don’t know how those fighting harder battles do it.

But we do because we are called. Chosen.

Each of us is chosen, by Him, for Him, to do His work and share His heart.

And whether the world ever fully accepts or includes or even mentions those He has chosen me to speak for, I will not stop.

My girl has been on three mission’s trips. One of my favorite times is when she gets home, after she has slept off the jet lag and weary fog of travel has lifted enough to sit and have her “tell me all about it.”

The last was Honduras. Something about this place tugs at the hearts of those who visit and beckons back. My brother goes often with his church and mine sends various groups to minister frequently. Missionary friends living there send updates and pictures of a place I have only heard of.

Maybe this place I have never been draws me so because I know of a hospital and an orphanage there. Places that house the vulnerable and hurting. Places I haven’t been yet the kind of places where my heart lives.

My daughter and her team went to do unto Jesus as they visited the sick, the lonely, the estranged and the forgotten.

They prayed over children in hospitals beds where heat hung thick from no air-conditioning and for whom modern medical care had not yet made its way.

The next day the team went to an orphanage to love those who, for whatever reason, are left parentless.

I can’t help but wonder the reason the children who reside in an upstairs room were left alone.

The special-needs room.

A place for the most innocent, forsaken, and isolated. I wonder who looked at their “imperfect” child and said no.

“Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble…”

My daughter went to up to one of the rooms, a little room within the larger special needs room where had gone yet.

In a crib, lying alone and shaking, a little boy came with a warning: “He’s abusive.”

She didn’t care.

And as she touched the trembling boy who was never touched, he stiffened and bristled.

As the power of her gentle touch went through him, he felt the warmth of something so primal, yet rarely experienced except for diaper changes and basic care.

Then he relaxed. As she told me this story, I pictured this fragile little boy breathing out and releasing the bondage of a life spent in a crib, unheld and lonesome – if only for a moment.

Photo credit: Joy Dodd

She went from child to child and touched the untouchable.

I think of Jesus touching the leper. Unafraid and only desiring to heal.

Compassion stronger than comfort.

In reaching out to a little boy with Down syndrome who was known to scratch and bite, she stood unwavering- maybe because God equipped her through her brother who often does the same.

And even as he spit in her face, she remained unmoved. Unshaken.

Because loving the different and misunderstood is messy.

“Hurting people hurt people” doesn’t just those who hurl insults or hit their spouses. Those with deep, inexpressible hurt longing to speak only to utter grunts often lash out in frustration.

So they are put into isolation.

The young men on the team brought down the bigger children who normally couldn’t because the “Tia’s” or aunts couldn’t lift them to watch skits, listen to teaching and just be with the other children.

Included and no longer isolated.

Young men and women held children for hours offering the comfort, power and promise of touch. Still I wonder who was touched more.

“If only I may touch His garment, I shall be made well.”

Healing power through a simple act we take for granted. Yet it can be everything to those who exist without it. Being the vessel through which mercy flows and rests on one small child.

And though my own ministry within my home- the very one who prepared my daughter- keeps me here, I can touch His garment through those who go.

And as difficult as it is for me in the natural to allow my own children to travel thousands of miles away, it is my sacrifice as they become Jesus to the neglected and lost.

“For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.”

“And the King will reply to them, ‘Truly I tell you, in so far as you did it for one of the least [in the estimation of men] of these My brethren, you did it for Me.’ ”

The least in the estimation of men. I can’t help think of my own son and those like him who society has deemed as “least”.

But to do for them is to do to Jesus Himself.

They are not least in His estimation.

The Message bible’s translation reads: “Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’ “

The overlooked and ignored.

The upstairs room.

The children who couldn’t come down.

The ones rarely held.

Done… unto Him.

My deepest desire is to do unto the One Who did it all for me. Doing as Him and being transformed into His likeness- heart by heart of those we touch.

Whether a nation far away, the grocery store, the workplace, the doctor’s office, a friend’s kitchen, a child’s bedroom, the walls called home –

My 16 year-old daughter boarded a plane (well, actually two) for Honduras today to go on her third mission’s trip.

In preparation for the trip, her youth mission team went on a weekend trip for team-building and visited a ministry in Atlanta called Bethel (an extension of Bethel in Redding, California).

Destination known only to parents and leaders, the team loaded a bus to the great the unknown. First arriving in Stone Mountain, they climbed the mountain and walked sky-ropes, conquering fears and learning to work as a team.

Later they learned of spiritual gifts and demonstrating God’s love to those around them. They learn to listen to His voice.

Then, these young people put words into action by “Treasure Hunting”. Treasure, by definition, is any thing or person greatly-valued or highly-prized.

The group gathers and prays for The Lord to reveal specific things then they ask to people if they can pray for them. Throwing off inhibitions and facing fear of rejection to fulfill God’s call.

Often they are turned down. Some might think they are those crazy Jesus-freaky, weird religious people.

But for those of us who know Him, Jesus Freak is kind of complementary. And oh, how I desire for people to understand that following Jesus is not religion. It’s so much more than rules and rituals. It’s showing His love.

When my daughter prayed she felt an impression of bright yellow but had no idea what this meant. A person in a yellow shirt? McDonald’s ? (Golden arches. I love teenagers and how they think.)

She was turned down several times. She became discouraged.

But then…

And elderly couple accepted her offer and the group prayed for this retired minister and his wife who was losing her memory.

And at the end, the gentleman pulled my daughter aside and asked her to keep his grandson in her prayers.

His grandson is 17 and doesn’t speak. He has autism.

And there it was. The open door. The not growing weary in well-doing.

With tears, she told this grandfather about her 12 year-old brother who didn’t speak and had autism and Down syndrome.

Then her friend told her to look down. As she stood on freshly-painted yellow lines at the entrance of Walmart, Jesus showed up in young people willing to be the hands and feet.

The group prayed for the man’s grandson.

Then, they began to pray and speak life over my son. My daughter’s little brother.

In a generation where death is spoken and mocking prevails, the compassion of the Father expressed through the sons and daughters brought hope.

What if my daughter had given up? What if she didn’t obey and told God it was just too hard and she was tired of rejection?

What if she worried more of what people thought than of what God thought?

“I have no greater joy than to hear that my children walk in truth.”

I’ve said of my son, we must love him than what others think of him.

We must love God more than what others think of us.

And obey him when it doesn’t seem to be “happening” for us.

I’ve been in that place lately, wondering if what I care so much about even matters. Growing weary in my well-doing and wondering is this of importance to anyone and most importantly- to the Lord.

How often are we so close and give up? How many don’t let Him in and miss it.

God loves those most weak and vulnerable. I must press on. I must not stop speaking for those who cannot speak for themselves.

“And let us not grow weary while doing good, for in due season we shall reap if we do not lose heart.”

For they are highly- prized. His treasure.

I must not lose heart for those who His heart loves.

I often refer to my children as my treasures. His children are His treasures. Greatly-valued and highly prized.

Today is Autism Awareness Day. A day I never thought I’d be writing about, let alone living.

We are aware of autism every day.

While pregnant with Joshua and learning his diagnosis of Down syndrome, I developed a sinus infection induced by crying. The doctor reassured me, “Down syndrome is the ‘Cadillac of disabilities’. I’d much rather have that than autism.”

Just as I was getting used to my Down-syndrome-may-not-be so-bad life, it reared its head – The Scarlet “A”.

There is no prenatal test. No blood test. Not even a really definitive test.

Not like with Down syndrome in which chromosomes glare black and white declaring disability.

Autism sneaks in and overtakes without warning. I did not see autism coming.

I never knew autism could co-exist with Down syndrome.

“Josh is way too affectionate to have autism. He smiles and hugs and looks me in the eye.”

An unscrupulous thief crept into my life and robbed me of all the possibilities I was told could be for my son with Down syndrome.

My heart broke bit by bit as I listened for newly-babbled new words which had faded into non-existence.

Hard-earned skills exchanged for obsessive and destructive behavior.

Play drifted away and excessive video-watching became the only interest.

The gap between milestones reached by his peers with DS widened and soon the chasm became too obvious to ignore.

I wanted the diagnosis to prove I was not in denial about Josh’s limitations.

A dual-diagnosis brought relief.

Relief that my son was not “just low-functioning”, but had something else “wrong”. That it was not that I had just not done enough.

Because I thought “enough” -enough therapy, enough hard work – all those things I was told would be “enough” – would make this helpless little baby reach his full potential. After all, that is what we are all told. With the proper resources and opportunity, people with Down syndrome can be contributing members of society.

So I hunkered down and did it all – therapies and specialists, meetings and workshops. I reluctantly put my baby in school at the ripe old age of three and waited. I waited for it and all the experts to make it “work”.

During this time, I had another baby and wondered if this contributed to Josh’s regression. Others seemed to have more time to devote to their special needs child, yet I couldn’t seem to “do it all” with four children under eight.

Accolades to the moms whose children did so well cut me to the core, as I couldn’t keep up.

Slowly, the little boy with Down syndrome drifted into a little boy with no words and upsetting meltdowns, overturning tables and biting classmates.

My precious little boy once praised and adored by his teachers became a problem.

My quest to find answers was met with opposition and seeming futility until at last it came.

The diagnosis of autism simultaneously comforted and terrified me.

My dreams shattered yet again as I grieved again for the son I thought I would have and the black hole deep in my heart grew until everything became clouded by a disability lens.

Wondering how my son could ever fit into this world where achievement rules, ability is applauded and being the brightest and the best is the goal.

Nothing seemed to apply to Joshua.

No sermon preached. No Bible verses studied. No meeting attended. No one seemed to have my “problem’.

My different kind of normal was again challenged. I felt alone in my noisy house-full.

I was afraid to tell my friends within the Down syndrome community that I prayed for Joshua to be healed. I feared judgment and criticism for not accepting him. Or worse – that I didn’t love him.

But my heart ached because of my intense love for him. My mother’s love, fierce and protective – burning against those who were deeming him a difficult child and raging against those who looked down upon him.

Offended at those who thought he needed to be healed and angry at myself for wanting him to be.

And not strong enough to live this kind of existence without help from God. I had cried to the Lord upon his diagnosis of Down syndrome and a severe heart defect, “God, I can do one, but both?? I am not strong enough for this!”

The wonderful thing is that I don’t have to be. When I am weak, He is strong.

God has allowed the different than what I ever expected and yet, He has shown me that I have been given a great honor in being Joshua’s mommy.

And that jealousy and comparison have no place. I need not compare him to anyone.

And as I continue to pray and ask for God to help me bring up this lovely creation He made in His image, I am reminded that He is my strength.

I am reminded that all feelings of failure and defeat are not of God, but as I lean not unto my own understanding, I find a path.

A path often rocky and dirty yet cleared by His grace little by little to guide me each step of the way as I muddle through this journey.

And while I am aware every day of autism, I am also aware that every day has new mercies, new opportunities and a new awareness of things wonderful and to be celebrated.

Lord, help me to live aware. Aware of all the wonderfulness that is life.

Recently a beautiful, inspiring video went viral called ‘Dear Future Mom”, addressing a mother-to-be whose unborn child has Down syndrome. Children and young people with Down syndrome themselves speak to her, telling her what life will be like.

“He will hug you.”

“He will run to you.”

“He will be able to speak.”

But wait…

My son has Down syndrome.

He is less than a month from his 12th birthday and completely non-verbal.

“He will say, ‘I love you mommy.'”

Words I’ve longed to hear with a deep, hollow ache.

I’ve wept a thousand prayers asking God to loosen his tongue for him to speak.

Because words are life-changing.

My heart pleaded for comforting words as I felt my son’s stirrings within my womb; instead, I heard, “You do know he will be moderately to severely mentally-retarded.”

Stories and blogs and video clips of those with Down syndrome accomplishing great things fill the World Wide Web.

I too searched the internet in its more limited scope twelve years ago. I became an information junkie and sought to prove that doctor wrong.

Scouring the internet and scrolling through picture after picture to find hope instead of the dread and anguish I felt.

One particular picture of a young teen-aged blond boy on a surfboard took my breath away.

It was my picture of how my Josh would look one day.

My Joshua looks very different than that imagined boy.

Our life with Down syndrome looks different that video.

Our life with Down syndrome is sprinkled with autism.

Would Future Mom want to watch our video?

My life looks like waking to the sound of a loud toddler toy at 5 am.

Most days like look like most others: watching movies, looking at books and DVD cases, throwing toys, wandering around the house and maybe going for a car ride. We have spent this entire spring break week at home.

Well-meaning friends often suggest things to do and I find myself replying, “No, he can’t do that,” way more than I would like.

I don’t attend workshops explaining puberty to my growing son who wouldn’t understand. I don’t go to seminars and conventions because the subjects don’t apply, the activities are too difficult and I delete a lot of emails from our various associations.

“He will help his dad fix his bike.”

Josh can’t ride a bike.

“He will be able to write.”

Josh doesn’t hold a crayon.

The stated possibilities of Joshua working, earning his own money, renting an apartment and living alone seem light years away for a boy who just learned to drink from a cup.

Countless times I have heard, “Treat him like your other children.”

I’ve tried, but it’s too different.

I was told that with early intervention and therapy and inclusion that nothing would be out of the realm of possibility.

But I did all that. I still do. And for a while it was the picture of what it was supposed to be like.

Then it became different.

We were no longer “More alike than different.”

We are now more different than alike.

Yet I still have hope.

And realize that different is not necessarily bad.

It’s just that, different.

Joshua says, “I love you mommy,” differently in his smile, in the gentle pull of my head to his and in the way he twirls my hair with his soft, chubby fingers.

His middle-of-the-night giggles make a sweet alarm.

I treasure this precious time, as I sit on the couch and write and listen to him clap, then sigh with delight.

I hear him smacking his tongue which tells me he’s thirsty and soon he’ll be up looking for a drink.

And I should make him do it himself, at least I’m told.

But I probably will get it for him.

I don’t mind his dependence on me, really. But we work toward independence while trying to focus on the “can” and not the “can’t”.

Independence and accomplishment are good things.

But they are not the thing.

Joshua is fearfully and wonderfully made. His life is worthy because he is a child of God.

He is not Down syndrome. He is not autism.

He is Joshua.

“He will be happy.”

Josh is happy.

“And you will be happy too.”

And I am.

The video of our life with Down syndrome is every bit as beautiful even if not the same.

Today is the Spread the Word to End the Word day. A day of awareness to end the use of the “R” word” retarded, retard and any other forms of such, like ‘tard’. A day recognized as a day for change.

But I and many others live this day every day fighting against the use of a word.

A word once used as a diagnosis is now used as a term of insult and mocking.

No place is sacred. Not stores or schools or even church. Corridors and walls echo “That’s retarded “, “I’m so retarded,” “You look like a retard,” and the list goes on. The word invokes such creativity is seems.

From “My hair looks retarded,” (Statements like these are so grammatically incorrect and frankly ridiculous I won’t even waste my time to comment) to a Facebook meme referring to laughing like a retarded seal.

Just how is the seal retarded? He flaps his hands, like one with autism. Is that what is funny? Is this what makes the seal “retarded”?

I ashamedly and reluctantly admit I used to use the word before it became personal.

And I don’t really recall my thought processes as I so flippantly berated myself by mumbling, “I’m so retarded.”

How I wish someone had asked the questions so I would have realized how hurtful it was.

So I ask you who continue to use the word: What makes something “retarded”?

What makes someone or something sound “retarded”? Is it noises like those who cannot speak make?

My son makes that “retarded” noise when he opens his mouth and has so much in him to say but only a grunt will come out.

And I often tear up because he wants to speak so badly and I see the frustration swimming in the pools of his blue almond-eyes.

He acts “retarded” with his obsessive towel-twirling and uncoordinated movements and not being able to use the toilet on his own while having to rely on others to change his large pull-up type pants exposing him in ways that would mortify a typical almost-12 year-old.

But he cannot express his embarrassment. He must deal with it because we have to change him. He cannot tell me when he’s sick, or sad, or just plain in a bad mood.

He’s developmentally delayed.

Retarded.

Do you see my son when you say it?

Or do you see a young man in a wheelchair with his head slumped over with drool seeping from his mouth?

Do you see a little girl with almond-shaped eyes whose tongue might hang out a little when she gets tired?

Or do you see a teenager who talks a little like he has marbles in his mouth and is hard to understand?

Do you see an adult with her caregiver in Walmart who runs up to give you a hug?

Do you see my son when you say it?

I see my son when you say it.

And it breaks my heart.

Because I see a smile that can reduce me to a sobbing mess because the soul behind it is so pure.

Because I feel a chubby hand in mine and on my face and I hear a belly-laugh from a boy who sees angels.

You – the one who still uses the word: Do you realize that it cuts so incredibly deep because I know there is an unspoken idea that maybe you are so thankful you don’t have a “retarded” child?

Or think it will never happen to you.

I sure didn’t.

What about you who are politely asked to stop and yet simply refuse? Who tell me or my kids it’s just what you say and you aren’t going to stop?

Do you think I’m too sensitive?

What about you who tell me that I am and that it’s just what “everyone” says.

And that it’s not aimed at my son.

Does the “N” word offend you? It does me.

But if it’s not aimed at you or one of yours or even one of my friends, should it be okay?

Hardly.

We are to speak life and not death.

The “R” word speaks death because my heart dies a little every time I hear it used by someone in the halls of my church who I know also loves my son.

Death every time my children have to hear friends use it and being mocked for standing up against it.

Would Jesus say “retarded”?

Would He fight so hard for His “freedom of speech” and right to say it?

He came to heal the brokenhearted. He spoke life and love and honor.

The “R” word speaks death and hate and disrespect.

Yet I’ve been told so much to the contrary.

I’ve been told that because the word simply means “slow” I shouldn’t be upset by it.

But is that really what someone means when by using the word? What image do you see?

I see my son who would smile and touch your hand even if you called him that vile, horrid word to his face.

Maybe he’s too “retarded” to know better.

Maybe He is like Jesus and forgives them because they know not what they do.

Maybe he knows his mommy will not stop speaking out for him because he cannot.

I have often heard that special-needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me that I “wear my heart on my sleeve.”

So my exposed heart gets hurt and the skin under my heart-covered sleeve is fragile.

And I become weary.

Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special-needs life” overwhelms me at times.

My child, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill require constant repetition.

Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over a delicate, yet mighty fortress which is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems.

Others practically live in a hospital, as I did for several years. Surgeries become commonplace.

Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that. Look.

Penetrating stares and flippant remarks seem acceptable and even appropriate.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But God doesn’t make mistakes. He chose Joshua for me.

His life is worth every single hard thing I must do.

Or hear. Or read. Or even ignore.

God’s grace enables me to turn the other cheek when I want to scream, “YOU DON’T LIVE MY LIFE!!!”

He has entrusted me with much.

Often the most difficult is not what I must do for him, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize that I am able because His power is made perfect in weakness.

And while my heart my lay open for all to see, I know Who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.

This morning I read a blog post commenting on another mother’s article justifying her decision to abort her son because he had Down syndrome.

And then I made the mistake of reading the comments.

No one argued that the woman the article speaks of was right in her decision. I read of how children with Down syndrome are God’s special gifts and how the mother will have to live with her regret for the rest of her life.

Yet, my eyes focused on the words I hear so many times:

“I wonder how many babies are aborted and nothing was wrong?”

“These tests can be wrong. I know of women who were told their baby would have Down syndrome and their baby was born perfectly normal.”

Ugh- perfectly normal.

I often share my story about my pregnancy with Joshua and the prenatal tests. And the way I was presented with the “option” (double ugh) to terminate my pregnancy, even after I watched my baby son suck his thumb on the ultrasound.

And then – every once in a while…

There it is. And my heart lurches a bit as my ears hear the unspoken insinuation.

And while I am sure it is never intentional, my special-needs-mama-mind hears:

“It is more terrible for a child who is “healthy” to be aborted.”

“It might be okay if the child had Down syndrome to terminate the pregnancy – really.”

I used to say when I was expecting my children before Joshua, “I don’t care what (gender) it is, as long asit’s healthy.”

How things can change.

Joshua wasn’t born healthy. He has a genetic heart defect and open-heart surgery at 6 months old. Colds and RSV turned into pneumonia which turned into week-long hospital stays every couple of months for his first 3 years. He has numerous surgeries and all dental work – even fillings- must be done under anesthesia.

I read in another blog recently that “healthy” translates for most to “normal”.

My son is not normal to most. He was born with Down syndrome. He was later diagnosed with autism.

He doesn’t speak. He is not toilet-trained and currently functions at about an 18 month- old level.

My perpetual toddler.

His life swirls in a plethora of acronyms: His diagnoses include DS, ASD and CHD. He exhibits signs of SPD. He has an IEP, gets ABA and has been in both TMH and PLA classes.

Do these things make him and others like him not worthy to be born?

Why does the existence or even possibility of a disability qualify a child for extinction? Why was I not given this “choice” for my other “healthy, normal” children?

I had no “choice” and there was no “option”. No choice is easier.

God says to choose life. He created all life, therefore ALL life is worthy of existence.

But when I read or hear things meant as encouraging, yet somehow it still suggests that a child like mine is still not quite as desirable or quite as okay as another.

And it breaks my heart.

Not just my defensive “that’s-my-baby-you’re talking-about” heart, but for the hearts of those who can’t see him and those like him for who they are and not just for what they will become.

I’ve had friends tell me that during their pregnancies, Down syndrome was suspected. And they “refused” it, even turning in a doctor’s office from pictures of children with DS. And that God answered their prayer.

I hear shouts of “Hallelujah” and Praise God!“ when someone gives a testimony that their child was thought to have DS and didn’t.

I feel a little offended and a whole lot of heartbroken that others can’t see that my son is just as much a miracle as that “normal” baby.

My daily miracles include holding a soft, padded little hand that doesn’t feel quite like any other. I breathe in his sweetness and kiss little shell-shaped ears. I still can nuzzle a sweet little neck. In return, he gives me head-hugs and pucker kisses and cheek- to cheek smiles for no particular reason.